Background As cancer survival improves, the risk of recurrence and progression (RP) places increasing demands on services. Population based cancer registries (PBCR) recognise the importance of recording these data items and seek defined standardised variables for routine collection of RP events. Methods Experts from 14 European countries under direction of the European Network of Cancer Registries (ENCR) defined RP for solid and haematological malignancies, standardised variables and coding formats for PBCRs. A seven-step modified-nominal group technique was used. A survey of RP data recording in 2023, an ENCR workshop in 2023 which included wider representation than from Europe and consultation with all ENCR members followed. Results Definitions were agreed with a tiered approach to data collection and guidance prepared: Cancer recurrence defined as cancer return after a disease-free period post tumour-reductive treatment (TRT) where cancer had a complete clinical or microscopic treatment response. Cancer progression - an increased disease load post TRT where a verified complete response was not achieved. Transformation where tumour changes from indolent to aggressive is covered in RP definitions. Survey responses indicated 31% of PBCRs collect data on RP for all cancer sites 11% for selected sites. Many identified additional resources, training and better access to clinical data required to collect RP data. Guideline implementation began January 2025 irrespective of primary diagnosis date. Conclusion RP data, standardised and collected by adequately resourced PBCRs, is a key step in quantifying service needs and outcomes of this increasing group of cancer patients. Registries need adequate resources to collect RP data.

HAWKINS Sinead T.;  MITCHELL Helen;  BENNETT Damien;  DAL MASO Luigino;  FARRÉ Xavier;  GIUSTI Francesco;  GRAHAM Karen;  HUWS Dyfed;  LAI Jennifer;  GEORGIOS Lyratzopolous;  MARCOS-GRAGERA Rafael;  MARTOS JIMENEZ Maria Del Carmen;  MANSON Claire;  MICHALEK Irmina;  MORGAN Eileen;  MORRISON David;  MOUSAVI Mohsen;  CARVALHO Raquel;  NENNECKE Alice;  ORTELLI Laura;  RANDI Giorgia;  ROUS Brian;  SMITH Karen;  TROJANOWSKI Maciej;  VAN EYCKEN Liesbet;  NEAMTIU Luciana;  VERDOODT Freija;  VISSER Otto;  WICKER Thorsten;  ZADNIK Vesna;  GAVIN Anna; 

2026-04-14

ELSEVIER SCI LTD

JRC143506

1879-0852 (online),   

https://www.sciencedirect.com/science/article/pii/S1877782126000822,    https://publications.jrc.ec.europa.eu/repository/handle/JRC143506,   

10.1016/j.canep.2026.103067 (online),